Authors (year) | Contents | Control | Outcome variables (measurement instrument) | Key findings |
---|---|---|---|---|
Aoun et al. (2015) [23] | Dignity therapy | N/A | • Patients: dignity related distress (PDI), QOL (ALSAQ-5), hopefulness (HHI), spiritual well-being (FACIT-sp) • Caregivers: caregiver burden (ZBI), hopefulness (HHI), anxiety and depression (HADS) | • There were no significant differences in all outcome measures for both groups |
Averill et al. (2013) [24] | Expressive disclosure | Blank | • Patients: Affect balance (ABS), depression (GDS), QOL (McGill QOL questionnaire), ambivalence over emotional expression (AEE questionnaire), emotional coping (Emotional approach coping), social constrains (social constraints scale) | • The intervention group had higher well-being than the control group at three months post-intervention, but not six months • AEE moderated three-month post-intervention well-being. Those low in AEE had higher well-being than those high in AEE regardless of condition |
Bentley et al. (2014) [8 | Dignity therapy | N/A | • Caregivers: Caregiver burden (ZBI), HHI, anxiety and depression (HADS) | • After controlling for the pre-post decrease in physical functioning of the person with MND, the pre-post increase in carer burden was no longer significant • There were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness at the individual level |
Bentley et al. (2014) [25] | Dignity therapy | N/A | • Patients: Hopefulness (HHI), dignity (PDI), spiritual well-being (FACIT-sp) | • There were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness at the individual level |
De Marchi et al. (2022) [34] | Chatbot webapp (dietary monitoring and nutritional recommendation) | Standard counseling (historical control population) | • Patients: body weight, Physical function (ALSFRS-R), QOL (ALSAQ-40) | • Regarding the change in weight in the Chatbot group, we observed a weight stabilization over the telehealth compared to the control group • No significant reduction in the slowdown of ALSFRS-R (both groups) • Significant increase of three subscales of ALSAQ-40 (Chatbot group) |
De Wit et al. (2020) [9] | Acceptance and commitment therapy | A wait-list control group | • Caregivers: anxiety and depression (HADS), caregiver burden (ZBI), QOL (CarerQoL), • Patients: QOL (MQOL), anxiety and depression (HADS) | • The support program had no effect on psychological distress (both caregivers and patients), but may be beneficial by increasing feeling of control over the caregiving situation |
DÃaz et al. (2016) [5] | Cognitive behavioral therapy combined with counselling techniques | Individualized psychoactive drug treatment | • Caregivers: anxiety and depression (HADS) | • The psychological intervention demonstrated potential for the reduction of anxiety and depression levels |
Fateh et al. (2022) [35] | Energy conservation program | Routine rehabilitation programs | • Patients: Fatigue (FSS), QOL (SF-36), occupational performance (COPM) | • Using energy conservation strategies could lead to better mid-term fatigue management and occupational performance improvement, but it did not improve QOL in patients with MND |
Horne-Thompson & Bolger (2010) [22] | A live music therapy session, recorded music | Reading or watching TV | • Patients: Anxiety and depression (HADS), anxiety (ESAS), heart rate and oxygen saturation | • Not significant in either the music therapy or recorded music groups. The majority of participants reported little or no anxiety prior to the interventions, and therefore, little change was noted in any of the groups |
Kavanaugh et al. (2020) [32] | Skills training and support program | N/A | • Caregivers: Caregiving tasks & self-efficacy (MACA-YC18), Goal attainment/behavior (5-Likert), Well-being behaviors (4-Likert), Social support (developed for the study) | • Participants reported significant increase in confidence in tasks, including communication systems and respiratory equipment Participants identified goal setting and creating behaviors to reach those goals |
Kleinbub et al. (2015) [28] | A hypnosis treatment and self-hypnosis training | blank | • Patients: anxiety and depression (HADS), QOL (ALSSQOL-R), physical function (ALSFRS-R) • Caregivers: anxiety and depression (HADS) | • The statistical analyses revealed an improvement in psychological variables' scores immediately after the treatment. Amelioration in patients' and caregivers' anxiety as well as caregivers' depression, were found to persist at 3 and 6 months follow-ups • Treated patients decline in ALSFRS-r score was observed to be slower than that of control group's patients |
Kolomeytseva et al. (2022) [36] | Home-based music therapy | N/A | • Patients: Pulmonary function (pulmonary function tests: MIP, MEP, FVC, PEF), swallowing (CNS-BFS) | • The music therapy was beneficial for the participants’ bulbar and respiratory functions |
Pagnini et al. (2022) [38] | An ALS-specific online Langerian mindfulness training program | Wait-list control | • Patients: QOL (ALSSQOL-R), anxiety and depression (HADS), physical function (SA-ALSFRS-R) • Caregivers: QOL (SF-36), caregiver burden (ZBI) | • The experimental group reported higher levels of QOL, lower values of depression, anxiety, and negative emotions, compared to the controls • The caregivers from the mindfulness group reported lower scores of care burden, depression, and anxiety, with higher values of energy and emotional well-being over time |
Palmieri et al. (2012) [29] | Hypnosis intervention | N/A | • Patients: anxiety and depression (HADS), QOL (ALSSQOL-R, ALSAQ-5) • Caregivers: anxiety and depression (HADS) | • Significant reduction of anxiety both for patients and caregivers, and significant reduction of depression for patients group only • Significant improve of total ALSSQOR-R and several subscales. Not significant difference of ALSAQ-5 |
Palmieri et al. (2021) [39] | Empathy-based supportive counseling intervention | Control 1: blank; Control 2: hypnosis (previous study data) | • Patients: Anxiety and depression (HADS), QOL (ALSSQOL-R) | • Depression and anxiety remained constant at the 6-month follow-up in counseling group, but the group Χ time interaction was not significant • ALSSQOL-R showed constant improvement in counseling group, and the group Χ time interaction was significant |
Raglio et al. (2016) [19] | Active music therapy | Standard care | • Patients: Physical function (ALSFRS-R), anxiety and depression (HADS), QOL (MQOL), music therapy process (MTRS) | • Both groups presented a general significant improvement over time in the psychological outcomes • AMT group maintained quality of life improvement, whereas the SC group worsened |
Sharbafshaaer et al. (2022) [40] | Individual tele-consult and resilience-oriented sessions of group therapy | Routine monitoring (phone call) | • Caregivers: Caregiver burden (CBI), resilience (CD-RISC), stress (PSS) | • No significant differences were found in CBI, CD-RISC, and PSS during the 9-month observation period in the treated group compared with the control group |
Ugalde et al. (2018) [33] | Therapeutic group intervention | N/A | • Caregivers: Depression, anxiety, and somatization (BSI-18), burden (Caregiver reaction assessment), problem-solving confidence (Problem-solving inventory), mindfulness (Cognitive and affective mindfulness scale-revised), preparedness (Preparedness for caregiving scale) | • No significant change in measures between pre-intervention and 6 weeks post intervention |
van Groenestijn et al. (2015) [7] | CBT sessions | Usual care | • Patients: QOL (SF-36-MCS, ALSAQ-40-EF), anxiety and depression (HADS) • Caregivers: QOL (SF-36-MCS), anxiety and depression (HADS), caregiver strain (CSI) | • Patients’ ALSAQ-40-EF and caregivers’ SF-36-MCS were significantly better in CBT than usual care • CSI was significantly lower in the CBT than the usual care |